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Research from Our Point of View




This website contains a thesis that was completed in 1996. The title of the thesis was Traumatic Brain Injury Rehabilitation and Compensation: Survivors' Perspectives. The research component of the thesis involved a year long study of people with traumatic brain injuries. The subject matter of the thesis included a theoretical analysis of certain topics of interest that the author surmised would be of interest to the brain injury survivor community, a community that included the author. The study was undertaken between 1995 and 1996.

The author sustained a tbi in 1985. Many years after the tbi, the author decided to see if she was capable of taking a Master's Degree. It was a slow process, eventually achieved. The author was very interested in reporting on the issue of brain injury from survivors' perspectives. Ultimately the topic was allowed, the work commenced, and the faculty advisors were incredibly supportive and knowledgeable about how to conduct a research project. Many others were also helpful with their special insights. Most praiseworthy of all were the study participants who happened to be people with traumatic brain injuries (TBI). They shared their knowledge and personal situations in order that the study go forward. This thesis, which actually came from the perspectives of persons with brain injuries, resulted.

It has been long years since the study, and yet the author finds that the situation for people with brain injuries hasn't changed that much. For people with TBI and other kinds of acquired brain injuries, brain injury can bring on great life challenges and changes. There are never enough resources for survivors and their families to cope with numerous struggles on many fronts that can result from brain injury. The issues faced are not just medical, but economic, cognitive, interpersonal, political, legal and spiritual.

In the ensuing years, the author came to realize that the brain injury survivor community included many others besides persons with traumatic brain injuries. It included persons with other forms of acquired brain injury (abi) including people with strokes, brain illnesses and other abi conditions. Although orginally designed as a commentary on the perspectives of persons with traumatic brain injuries, the thesis also can extend in many respects to the issues of the larger acquired brain injury community.

In conclusion, we survivors with any kind of acquired brain injury must continue to communicate to get our viewpoint on things out into the public arena. Some survivors are affliated with the Brain Injury Network ( and Survivor Acquired Brain Injury, two interconnected entities that promote collective and self-advocacy for survivors of acquired brain injury. We continue to develop and disseminate a public policy agenda that will benefit our survivor community, that is to say, people with acquired brain injuries.


Susan C. Hultberg, M.A. and J.D.

August 1, 2012 postscript: The author of this thesis and web site is pleased to announce the publication of her book entitled Brain Injury Advocates: The Emergence of the "People with Acquired Brain Injury" Human and Civil Rights Movement. This book is available for purchase. Please click here.




Brain Injury Advocates book cover

Order here.


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Survivor (of)
Acquired Brain Injury

A Survivor Advocacy
and Social Community


A Survivor Operated
Advocacy Organization


Brain Injury Directory - Promoting Survivor Collective and Self-Advocacy
Brain Injury Directory

Resources for Survivors
(Note: This is a large directory and takes a little extra time to load.)


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